Friday Five: Living with a Nasty, Incurable, Rare Disease

Yes, living with a nasty, incurable, rare disease is horrible. It is also very funny. Or, perhaps, I have a gallows sense of humor.

 (Before I start this, let me say, since I’ve received my diagnosis, all my doctors have been infinitely kind and caring. I wish all the doctors before the diagnosis had been the same. But that’s another story.)

 How doctors respond to me and Ehlers-Danlos Syndrome.

 When I meet a doctor for the first time, they usually have not looked at my chart. I understand—too many patients, too little time. After greeting me, they say, “So what brings you in today?” I smile my I-hate-to-do-this-to-you-smile and say “I have Ehlers-Danlos Syndrome.” Doctors respond in many ways.

 1. The doctor blinks. He/she blinks because the diagnosis rings a vague alarm bell in their mind. But only a vague one. The doctor makes polite conversation and excuses themselves. While I wait, they are Googling EDS on “Google for Doctors.”

 2. The doctor is disconcerted by getting stuck with an Ehlers-Danlos Syndrome patient. “So, you have ED…”

I try really, really hard not to laugh. In some alternate, doctor world, maybe ED is an acronym for EDS. But in the patient world, ED stands for something else, and I don’t have it.

 3. They pale. My favorite response is the doctor who said, “I read about it in medical school. So, um, why don’t you tell me whatever it is you need, and I’ll greenlight it.”

 4. They try to fix me before they know what’s wrong. These are the doctors who look at my medications list before they look at my diagnosis.

 Doctor: You are on a lot of medications. How do you feel about that?

Me, I feel @#!#? about it, but I say: Well, I have Ehlers-Danlos Syndrome.

Doctor: Oh, right. Good. So, these medications are propping you up.

Me: Yep.

5. The doctor pulls up my x-rays: Doesn’t say a word because he/she is gasping. A second later, he/she is figuring out how to pretend they didn’t gasp.

 I know it’s a Friday Five, but this is your lucky day because I have six.

 6. The doctors perform a procedure (or surgery): These always go wrong. Really, really wrong. When I am awake for the procedure—not often the case—but when I am, I hear the assisting resident say to the other doctor, “Did you see that? What the *%#* happened?”

I tried to warn them beforehand. Honest, I did.

Nota Bene: I included the cute zebra photo because zebras are the mascot for EDS. The photo is from Wikimedia Commons.